The start of the itch and the road to diagnosis.
When I was a kid I spent every summer with blisters all over my hands, numerous doctors saw it and prescribed creams but I never got a diagnosis. It stopped for many years in my teens then as I got older I started getting them every summer again. It was eventually diagnosed as a sun allergy or Polymorphic Light Eruption. This year they started earlier than usual, by April I had a lot but then I started getting more red spots on my wrists that then spread up my arms. I tried different antihistimines, then got some prescribed by my GP. All helped briefly then stopped helping.
They itched, they itched so badly I thought I'd end up tearing my skin off. Then in late May my legs started to itch, After a while spots came up every night when I scratched, my whole body itched for hours especially from the evening until the early hours. Larger spots appeared on my legs, they turned into large lumps and spread across my middle and hips. I was back to see my GP regularly, had blood tests, steroid cream and at the end of August I was referred to the dermatology clinic. Five days of steroid tablets helped only very slightly.
I had my appointment at the dermatology clinic and came away with the diagnosis of Nodular Prurigo, moisturising cream, steroid ointment and antihistimines. My daily routine now includes covering myself in cream when I get up, putting steroid ointment on the nodules and covering those spots and nodules that are sore or catch on my clothing. After a shower the cream goes on again, then at night it's the same as morning. Antihistimines taken about an hour before bed, it's been bad this week so I'm on two tablets at the moment. Often I wake itching in the night so the cream goes on again to soothe it. Sometimes my skin is hot and I end up getting up for a cup of tea to let my skin cool before the cream goes on.
Last night I slept well for the first time in ages. It was the first time I wasn't awake at 2am in weeks, possibly months. My average night involves being in bed and trying to sleep by 11.30pm. If I do sleep I wake again itching anywhere between 12.30am and 1.30am. Then on a good night I'm asleep again by 3am. On a bad night I don't get to sleep until 4am or later.
A typical day of symptoms.
I itch, I almost ALWAYS have a itch somewhere on my body. Some mornings I wake because I've scratched and caught a sore nodule and the pain wakes me. Mornings are generally the best part of the day, I have small itches, normal itches that are a irritating my skin. These are mild and easily to ignore when I'm busy and I can usually avoid scratching. By mid afternoon it ramps up a level. My arms feel like they are coming alive. I was thinking yesterday how to describe the feeling I get, usually in my arms but sometimes in other places. When it started I realised I can do that. The feeling you get when you get goosebumps starting, when you can feel the hairs on your arms start to rise, that's what it feels like except you don't have goosebumps, the hairs aren't rising but it feels like they are. It goes on for hours, I'm constantly aware of my arms or whatever part of me it is happening to. That's the beginning of hours of discomfort on a bad day.
Next is the prickling some days. That's harder to explain. It's like there is a dozen tiny hedgehogs rolling around on your skin. Sometimes in a small area, sometimes all over. Hundreds of prickling sensations that make your suddenly jerk your arm or leg or need to touch or scratch desperately. At night I can wake with my arm suddenly jerking or my back because of the prickles.
The worst itch in the world usually begins about 8pm, worse if I've had a bath or shower. I love a long soak in the bath but have had to switch to quick showers most days because baths make my skin worse. The itch starts gradually, I become aware that I'm itching without thinking and I try hard to stop doing it. If I have a shower I put long sleeved pyjamas on so my skin is covered. It's not just that the itch is constant at times, it's the worst itch I've ever known. A normal itch is on the skin surface, you rub or scratch that bit of skin and it eases. This itch isn't on the top of the skin, it feels like it's under the skin, at times it's almost as if my bones itch. If it starts on my thighs it's a nightmare. Being so fleshy it hurts to scratch it hard but at times it's the only way to get relief from it. I've woken some mornings with lines of bruises on the inside of my thighs where I've scratched so hard in the night.
Before I started on my current regime I could scratch for up to 2 hours constantly. Trying to sleep my arm would itch so I'd scratch. Then it'd move to the other arm, then my leg, them my back, then feet, then buttocks, then back to my arm etc. It would stop itching so I'd turn over and get comfortable and try to sleep again but a couple of minutes later I'd feel it starting to build on some part of my body that I couldn't reach from my comfy position so another hour of itching all over started again.
It was a huge relief to get a diagnosis. I was so happy for a few hours then it sunk in that I've got a chronic condition that I could spend years trying to get control of and may never be free of. I had a couple of hours feeling very down and sorry for myself then realised I need to learn more to try to get the right combination of treatment to get it under control. As there is so little known about NP and much of the information is vague and theories I could spend months researching and I still won't find a magic answer to get rid of it. Luckily I found the NP support page and facebook group which has helped a lot. Being able to talk to others who also have it makes a huge difference.
I'll stop for now, I could probably go on for a lot longer but I'll need to do more than one post about this as I find more information and come to my own conclusions about this. I'll add the NP group address and a few photos of my skin at present. If you got this far, well done and thank you.
http://www.nodular-prurigo.org.uk/npi/
No comments:
Post a Comment